September 28, 2020 § Leave a comment
By Lisa Erin Sanchez
Let us begin with beauty. “On a great day, in the light and under the gaze of a full-length mirror,” writes Brown, I know what’s beautiful about me and what I have to offer. On the bad days, I can appreciate what I knew to be true on the great days. I am a black woman with beautiful skin; the fingers on my right hand bend in interesting ways, and they are beautiful, too. Traveling farther down my fingers you will find faded scars on my last three fingers and one large scar in the space between my thumb and finger that took me longer to love. There is a black circle farther down my hand that I hate still, because my love is a work in progress” (143).
A year has come and gone since these words first appeared in the eponymous chapter of The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me, Keah Brown’s powerfully vulnerable essay collection about her thoughts and experiences as a black writer and activist with cerebral palsy. In that time, voicing self-love and body positivity has become an increasingly urgent and revolutionary act.
With the onset of coronavirus, many disabled people expected to find increased awareness outside disability communities. The fact that anyone could be exposed to a disabling and life-threatening illness might have provided a bridge of empathy to understand, for example, the pain and exhaustion Keah Brown expresses with humor and grace in chapter one, “Can We Sit for a Sec.” It could have provided a window into the careful maneuvers that those of us with immune conditions go through every day to avoid illness and other triggers.
But coronavirus has not made allies out of anyone who was not already an ally. More often, it has brought out a stingy, ugly side of humanity. What previously lie latent as silent judgments about our credibility or blameworthiness is readily voiced now in the form of demands for “vulnerable people” to stay inside, apparently indefinitely, so as not to interfere with other people’s precious freedom. Unlike able-bodied people who are sheltering-in-place, the implication is for disabled people to become ever more invisible and isolated, individually responsible for staying out of the path of the virus.
A glimpse of this type of microaggression, pre-COVID, is offered in chapter five of The Pretty One when a stranger approaches Brown with an offer to cure her through prayer. Notably, Brown was twelve at the time. Similarly, chapter seven illustrates the social media backlash Brown received when she called for disabled people to be included in beauty ads. “The tweet: Where are the disabled people in your beauty campaigns? The response: a flurry of tweets that called me everything from a crippled bitch to a Rihanna hater” (133). These stood out to me as our 2020 culture grapples with political divisiveness and increased disregard for the disabled and other vulnerable individuals. Indeed, as someone who has attempted to effect social responsibility in my right-leaning California community, I, too, have been subjected to trolling, harassment, and even stalking.
But Brown does not linger in this hostility. Her project is to illustrate the fullness of her humanity and by extension the full humanity of all disabled people. Today, as I write, she’s engaged in a new effort to highlight disability inclusion. In her New York Times article, “Disabled People Love Clothes Too” (July 26, 2020), she argues that fashion is a window to the soul and that accessible clothing needs to encompass style as well as function.
Using a similar pop culture lens in The Pretty One, a story about the everyday life of a young black disabled woman who is in love with music and film and love itself unfolds. This narrative seeks not to normalize disabled people of color but to challenge the tropes that leave us on the outside of the very songs and movies and communities we cherish. As Brown points out, “normal is a harmful idea that sustains itself by dictating rules of what should and should not be” (60). At the same time, even our joy can come at a price. In chapter four, the joy of discovering a disabled black woman represented in the Fantastic Four character, Alicia Masters, is tempered by disappointment that Masters is played by an able-bodied Kerry Washington and ambivalence about the urge to critique a film that features a popular black role model and broadens the horizons of cultural representation, if falling short on inclusion for disabled actors.
It is this complex interplay of race, gender, and disability that makes Brown’s The Pretty One so unique. In chapter three, “Is This Thing On,” she takes the language of disability to task. Having attended college in the early days of the Americans with Disabilities Act, I was interested to learn how millennials like Brown were navigating both the law and the language. Was there some new way to speak about ourselves, our desires, and our struggles that serves to counterbalance the challenges waged against the Americans with Disabilities Act and the people it’s meant to serve? I was pleasantly surprised to find that the preferred term for Brown remains the same: “I am a black disabled woman. I am not . . . any other iteration of disabled that says anything but the word disabled” (51).
While Brown rightly insists that the disabled community is not a monolithic group and each person must be empowered to choose her own identifiers, she views alternate terms like “differently abled” as an effort to make able-bodied people comfortable. “When I stopped caring about the comfort of able-bodied people with regard to the language used about my disability, I felt free for the first time in my life” (51).
To finish where we began, I am standing in front of the mirror in my bathroom. My left eye is swollen and half the size of my right. It hurts when I move it, which means I won’t be able to write as much as I’d like to today. But this is my job. Writing and being disabled is my unpaid profession, so I will write as long as I can stand it.
My swollen eye is one of the few visible symptoms of my medical condition, and it will go away in a couple weeks, while my body takes a break from attacking its own tissues or shifts to another organ. For my entire life I’ve called this symptom “droopy eye,” which is the name my family gave it, but the technical term is periorbital edema.
Periorbital edema hurts.
There are several other hurts that you would not be able to see if you looked at me today. The chest wall on my upper left side hurts, as does my stomach in the mid-section just below my liver, and the swollen lymph nodes behind my ears. These are all symptoms of my immune condition, which also causes prolonged high fevers at unpredictable intervals several times a year. In a bad year, I have fevers every month—just enough variation in the frequency to make me doubt my own reality.
At this time in my life, a Gen X woman with a millennial son who inherited my condition, I have learned to live with the pain and unpredictable nature of my disease (this is the word I use—like it or not, that’s what it is).
What I’m trying to learn from Keah Brown, who is the same age as my son, is to love my body as it is, with all its scars and pains. I am trying to learn that I don’t have to hide my rashes—they are beautiful red flower petals, raised and swollen, beaming heat and light.
I don’t have hide my C-section scar, the one that was created when my body refused to give birth while my fever raged at one hundred and five.
I no longer have to call the long scar on my knee a battle wound. This is my skin.
I will learn to love the marks on my body because they tell me who I am, they are a sign of the stubborn fevers and pains I have lived with every day of my life. I will learn to love them because my love, too, is a work in progress.
Lisa Erin Sanchez received her Ph.D. from UC Irvine and served as full time faculty in New York (UB), Chicago (UIC), and at UC San Diego where she had a joint appointment in Ethnic Studies and Critical Gender Studies. Her short stories, reviews, and essays appear in Los Angeles Review of Books, The Millions, The Rumpus, Wrath-Bearing Tree, and Porter Gulch Review. Her scholarly nonfiction is widely published. She is mom to one immune-disabled son who shares her genetic condition, which she has written about in her second novel, a near-future work of speculative fiction. She can be found at www.lisaerinsanchez.com and on instagram @lisaerinsanchez where she posts about books, science, and nature.
This Blog essay is part of our September 2020 special focus on Experiences of Disability. Read our guest-edited special issue of the magazine for more.
September 16, 2020 § 3 Comments
In the introductory conversation around Brevity‘s special issue on the Experiences of Disability, Sonya Huber asks her fellow guest editors Keah Brown and Sarah Fawn Montgomery to discuss how disability shapes their writing process, including ways in which their disabilities can change and deepen what and how they write:
Sarah Fawn Montgomery: Of course disability impacts my writing by sometimes limiting when, if, or how much writing I can accomplish, but disability also deeply informs my craft. It is subject and structure, influencing everything from framing and pacing, to detail and syntax. Disability has also shifted my writing practice. I know that I might not always be well enough to write, so I take advantage of any opportunities and am grateful rather than critical of the work I produce during this time. I recognize that long stretches of writing time are not always possible and have learned to write in short spurts and in unexpected locations. Sometimes I write daily, but many times I do not, and I do not feel guilty for taking time away to care for my body and brain. I understand this as another kind of writing practice, because caring for ourselves away from the writing eventually allows us to put words on the page.
Keah Brown: Disability impacts and shapes every aspect of my life. I am not just my disability but it is the lens through which I navigate the world. The writing process is no different. Earlier on in my career, I felt beholden to discuss disability, and that left me resentful, but as I have matured and grown, both as a person and professionally, I have realized that disability is a part of the nuance I bring to my work. The lens of disability has allowed me to get creative on the days my body won’t allow me to work at all. Shaping the way I approach work, disability is at the center of my work particularly in holding myself and others accountable, as well as giving me the opportunity to be assertive in what I need in order to create and when I need to say no. The truth is this: disability does shape my writing process from beginning to end in precious and obvious ways, but more important than words on the page, is the ability to shape me as a person. I am such a cliché, friends!
You can read the full discussion here.
September 15, 2020 § 2 Comments
The “Experiences of Disability” issue is guest edited by Keah Brown, Sonya Huber, and Sarah Fawn Montgomery. Artwork by Jill Khoury.